Table 2.

Main themes and subthemes

Main themes	Subthemes
Becoming a self-taught provider of home-based skin care	Interpreting the child’s symptoms and pain Organizing skin care and experiences with home care providers Knowledge transferred from parents to child Fear of social misinterpretations
Balancing roles	Tension between illness-demands and the child’s psychological needs Siblings and parental role
Ahead of every challenge	Parents as gatekeepers Inclusion and exclusion